GNS Healthcare Blog

A Thoughtful Approach to Data Sharing: Why We All Need to Participate

There’s been much talk about the unprecedented volume of healthcare data now available (and if you read our blog you know we have covered it as well). So how do we share this data effectively, so we can provide better care and treatment for patients? For starters, we need more robust Health Information Exchanges (HIEs) and a better integrated data flow.

That’s the clear message coming from the Interoperability, Health Information Exchange and Advocacy Day hosted by the New England chapter of Health Information and Management Systems Society (HIMSS) that I recently attended. The all-day educational conference focused on industry trends and regional innovations that are driving interoperability forward. The discussions centered on public policy and what innovations payers, providers and vendors are creating to better share data.

Increased data flow is especially crucial for those of us in the field of artificial intelligence and advanced analytics. Data is the fuel that powers these software platforms and accelerates the discovery, development, and deployment of new therapies and interventions that can help patients who need them. The better the quality of the data and the more we have available to use, the more we can discover and impact individuals’ health.

The government is committed to improving interoperability and data sharing. The passage of the 21st Century Cures Act has helped clear the way for health information and technology professionals, organizations and entities to drive toward those goals.

The Office of the National Coordinator for Health IT (ONC) has a ten-year plan for advancing interoperability with a goal of achieving nationwide interoperability to enable a learning health system and real-time data access by 2024. The roadmap lays out a vision to improve technical standards, clarify and align federal and state privacy and security requirements and coordinate among stakeholders to promote and align consistent policies and business practices that support interoperability¹.

These are worthy efforts, and ones which resonate across the healthcare ecosystem. But while the government moves forward, there is more that the private healthcare sector can do. Here are three things we can be doing now to help advance the cause of interoperability and free data exchange.

Develop a set of standards for data exchange

When meeting with peers and other industry leaders, discussions often lead to the need for a set of standards for data exchange. There are things we as members of the HIE society can agree on and codify to enable organizations to more easily share data.

For example, we may agree to share deidentified, diagnostic, treatment and drug information that isn’t covered by intellectual property constraints. Coming up with a generic standard enables organizations with high-end analytics tools to draw on more databases for reference and to conduct much needed research. Some of these databases can be accessed for a fee but for startups and other companies that can prove to be a cost prohibitive option. Establishing a set of standards will allow us to start interconnecting and leveraging the data so all can benefit from it.

Create a searchable data market exchange

In recent years, organizations across the healthcare spectrum have invested heavily in creating and aggregating massive data sets, but it is often difficult to find the exact data you need. Google has launched a new search engine to help scientists and researchers find targeted datasets. The service, Dataset Search, will index data from universities and governments that includes metadata tags that describes the data, who created it, when it was published, and how it was collected. Users can then search for the specific type of data they want.

We can take this a step further by creating a data exchange marketplace made up of the wealth of datasets from private organizations – like an Amazon marketplace for data. For example, a researcher may need clinical trial data for a random disease with certain types of subpopulations. He or she could go to the exchange, enter in the desired parameters and the engine would return where that data exists and how it can be accessed. The exchange could include some free data that is already in the public domain as well data from providers available for purchase.

Encourage greater security through increased certifications

The biggest challenge to interoperability and the free exchange of data revolves around security. For organizations to make data available, they need to be confident that the acquiring entity has controls in place that guarantees the safety and security of the data. HIPAA and PCI regulations are fine as far as they go but are not enough to mitigate cybersecurity threats. The most effective way ensure trust between organizations and patients is to acquire a higher level of security certifications.

To address the need for more robust security safeguards, GNS, along with many other organizations, have opted to become HiTrust CSF (Common Security Foundation) certified. The program provides a certifiable framework that provides organizations with a comprehensive, flexible and efficient approach to regulatory compliance and risk management. The rigorous standards of this certification provide the needed structure, clarity, functionality and cross-references to authoritative sources.

Other advanced standards that help ensure organizations are operating in a secure environment include ISO 27001, a family of standards that help manage the security of assets and keep information secure, and SOC 2 issued by third party auditors based on an assessment of the extent to which an organization complies with one or more of five trust principles based on the systems and processes in place.

Attaining these certifications not only keeps your IT house in order, but it also provides security from a corporate governance level and enables you to share data while staying compliant. We need these deeper and wider certifications that shows others how you are protecting your data assets and also that you have a repeatable, measurable, proven security infrastructure in place.

Sharpening our vision with data

The appetite for data has never been greater and the impact of having access to more quality data is not merely theoretical. With improved data sharing, there are practical, real-world implications for patients.

Biology is complex, diseases are difficult to unravel. If we are restricted to analyzing just a certain data set, our understanding is limited to that particular lens. The more data we leverage, the stronger the lens, and the clearer our vision becomes. This in turn magnifies our ability to discover novel insights and brings otherwise invisible causal relationships into focus. For each of us as patients or healthcare consumers, this kind of clarity has real life implications for our health, well-being and longevity.

So yes, we should encourage data sharing – but we all need to do so securely, responsibly and thoughtfully.

[1] Connecting Health and Care for the Nation, A Shared Nationwide Interoperability Roadmap, The Office of the National Coordinator for Health Information Technology, HealthIT.gov website.

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About GNS Healthcare By leveraging the most powerful form of AI, called causal machine learning, we transform massive and diverse data streams to precisely match therapeutics, procedures, and care management interventions to individuals. We understand that in order to make precision medicine a reality, we need to discover and deliver insights that will cure disease and heal the healthcare system.